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Seanad

Nithe i dtosach suíonna - Commencement Matters ›

Organ Retention

Summary

Senator Tully raised a case of stillborn baby organ retention without parental consent, saying the family received no clear explanation or apology and that similar failures affected many families. The Minister expressed sympathy, noted past inquiries and the Human Tissue Act 2024, and said the new law will strengthen consent and regulate organ retention.

Dee Ryan Acting Chairperson Fianna Fáil

I welcome the Minister of State, Deputy Murnane O'Connor, to the Seanad.

Comment on this

I was contacted by Paula, who lives in Cavan. Her son Tadhg was stillborn on Sunday, 5 June 2016 in Cavan General Hospital. She consented to an autopsy, which was carried out on 7 June and buried her little son on 9 June. Tadhg's parents received the post-mortem report on 17 November 2016, which was a period of five months later but this is not the main issue they have. A year after this, in November 2017, which was 17 months after she had buried Tadhg, she received a phone call asking what she wanted to do with her son's brain and left lung. She was absolutely shocked and horrified. She did not know her son's organs had been retained. She had never been informed or had never given permission for this. The autopsy on her son was carried out by Dr. John Gillan. The post-mortem result did not indicate in any way that the organs had issues relating to his death. In fact, it was hospital error that was the cause of her son's death. An inquest was held, so it was March 2021 before she could bury these organs. A full five years and nine months had passed after she had originally buried Tadhg. She had the horrific experience of opening up his grave and, as she said, opening her wounds of grief again, to bury him whole.

In November 2022, "RTÉ Investigates" did a programme on this issue. It turns out that it was not the first time that this Dr. John Gillan - and he has been named in the programme and publicly, and he has admitted himself that he is involved - did this. Indeed, it seems he has been involved in hundreds of cases, or maybe more, similar to this one, where the organs of babies who had died at birth or who were stillborn were retained. He carried out the autopsies and retained the organs. In the late 1990s and early 2000s, concern was raised about this issue. The Government at the time did commission an expert report to investigate the scandal. The results were published in 2009, and the HSE subsequently initiated an investigation.

It found that one hospital, the Rotunda, had a very different practice to a lot of other hospitals, and this was the hospital where the pathologist, Dr. Gillan, operated from. He was let go from that post on foot of these investigations. It is shocking to find that years later he was still being commissioned to carry out autopsies in different hospitals around the country by the same HSE that had commissioned the report and found that he should be let go for these practices. He was still doing this. Apparently, organs were retained without permission or consultation up until 2020.

It has been almost ten years since Tadhg died, and Paula and her partner and their family have never been told why Tadhg's organs were kept, have never received an apology for this and do not feel that Dr. Gillan was held accountable or responsible. As I said, Paula is not the only one to have been in this position. Many other families are in very similar positions. It is very upsetting, and still very upsetting, even after this length of time, that they feel they have been ignored.

I ask if this matter could be looked into again. The evidence is there. We know who is responsible. I know legislation has been passed which tightens up this whole area, the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024, so, hopefully, it will not happen again, but I still think we need to look at and deal with the cases where it has happened.

Comment on this
Jennifer Murnane O'Connor Minister of State at the Department of Health Fianna Fáil

I thank the Senator for highlighting this serious issue and concern. I know it is ten years ago, as the Senator said, but I also send my sympathies to Tadhg's parents. It does not matter how many years ago it was, it is still very emotional.

I am taking this Commencement matter on behalf of the Minister for Health, Deputy Jennifer Carroll MacNeill, because she cannot be here. I thank the Senator for raising this important issue. First, I express my deepest sympathies again to all those affected by the deeply troubling issues around organ retention. It is an unacceptable and very distressing situation for anyone to go through, especially after having experienced the tragedy of losing a beloved child.

Most post-mortem examinations are a vital part of medical practice. It is one of the most informative investigations in medicine and can provide objective information on the cause of death, which is of value to the family of the deceased, to healthcare professionals and to other interested parties. Post-mortem examinations can provide information about the risk of inherited diseases, which might be of benefit to family members in seeking necessary care and treatment. Post-mortem examinations can provide information to improve understanding of how disease is caused, advancing medical knowledge and helping others by contributing to the fight against disease and how it can best be treated. Organs or tissues are sometimes removed and retained as part of a post-mortem examination, primarily to allow for analysis of the cause of death. In hospital post-mortem services, this follows a detailed information and consent process with families.

Consent processes underwent significant change and improvement following justified outrage, and that is factual, about post-mortem and organ retention practices in Ireland. Several inquiries have addressed the controversies around organ retention. The Dunne inquiry, as the Senator said, was established to investigate post-mortem practice and procedure in all hospitals in the State since 1970. The inquiry commenced its work in March 2001 and submitted a report to the then Minister for Health in March 2005. In May 2005, Dr. Deirdre Madden was appointed to examine the findings of the Dunne report and to provide the Government with a final report on post-mortem policy and practice. This report was published in 2006. A subsequent report of a working group, also chaired by Dr. Madden, on other areas of post-mortem practice and procedures was published in November 2006. An independent audit of all retained organs in the State, which was commissioned by the HSE, was carried out by Ms Michaela Willis and this report was published in 2009. The HSE subsequently developed its standards and recommended practices for post-mortem examination services and circulated these to relevant hospital staff in March 2012. The overall aim of the 2012 guidelines was to drive high quality post-mortem examination services, based on legal requirements and in keeping with best professional practice. These guidelines were recently updated to the HSE national clinical guidelines for post-mortem examination services in April 2023.

The Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024 was enacted in February 2024. Part 3 deals with pathology practice and implements many of the findings of the Madden report from 2005. This will establish a new regulatory regime to ensure best practice is followed in the conduct of post-mortem examinations. The Act introduces consent provisions for non-coronial post mortems and sets out a clear framework for how consent is to be obtained and the information that must be given to individuals or their families when seeking such consent. The Act also provides for the regulation of the retention, storage, use, disposal and return of organs and tissue from deceased persons following all post mortems in hospital settings, including those directed by a coroner. The Act also amends the Coroners Acts 1962-2024 to address issues with regard to material removed and retained from the deceased person in a post-mortem examination directed by a coroner. This is something that families directly impacted by recent controversies have called for, and it is important that the legislation has not only acknowledged these requests but has addressed them.

I will be coming back in, but I think it would be important that the Senator would email me all that information, if she would not mind. I will also have a meeting with the Minister, Deputy Carroll MacNeill, on this matter.

Comment on this
Dee Ryan Acting Chairperson Fianna Fáil

Before Senator Tully recommences, I welcome to the Public Gallery the students and teachers from St. Mary’s Holy Faith school, who are guests of Deputy Johnny Guirke. They are very welcome and I thank them for joining us. I call Senator Tully.

Comment on this

I thank the Minister of State. The reply outlined the important changes that have taken place since, and they were required. Unfortunately, though, there was such a gap from when the initial investigations and reports were undertaken, which were all in the early 2000s, until the Act was passed in 2024. Paula lost her son Tadhg in that period. Had action been taken quicker, perhaps that might not have happened to her and many other families.

There is also the fact that it is this one pathologist. The question is why. He was made to leave his post or was fired or whatever the terminology used was. The question is why he was then allowed to carry out autopsies in other circumstances. As Paula said, she just never got the explanation or the apology concerning what happened. That is really heartbreaking for her. I know it is because she and other families have spoken out about this issue that the legislation has been introduced, and rightly so. It is not that anybody queries the need for autopsies and how important the information that can be gleaned from them on the cause of death is. It is just about the consent for and the knowledge of what is happening to the bodies of loved ones.

Comment on this

Again, no words can ever make up for the distress experienced by affected families who have lost a loved one, particularly bereaved parents. The inappropriate retention of organs only added to the families' distress and grief. Dignity and respect for parents who have experienced the loss of a child is of paramount importance. This is why it is so important to commence the provisions of Part 3 of the human tissue Act which will establish a regulatory framework for the conduct of post-mortem examinations that embeds in law the idea that consent is the defining principle across activities involving human tissue.

Under the Act, consent will be needed from families for arrangements relating to burial, cremation or the return of any organs retained from a post-mortem examination. The management of any organs must be in line with the wishes of the family. The human tissue Act 2024 includes a number of offences for which someone can be prosecuted for serious breaches of medical practice or records management. These are not intended to criminalise clinicians but a balance must be struck.

A culture of patient safety and quality assurance, as well as open communication, must be at the heart of high-standard health services. It is important that we take all steps to prevent this ever happening again. As I said, I will meet with the Senator, and I will absolutely speak to the Minister, Deputy Carroll MacNeill, on her behalf.

Comment on this